Tag, I'm It

Let's talk about being single, living alone, and having RSD, shall we??  I'm it.  I'm all I've got.  When I fall, when I can't get up, when I can't walk, when I need to eat, I am the only person in the house that I can look to for help.  So if I don't eat, yes it's my own fault, but then again, not really.  I could get up to cook (or reheat) if it didn't hurt so bad to stand on flaring feet, or if the dystonic tremors would subside long enough for my hands to hold on to pots, pans, dishes, and utensils.  There are times when I have to booty-scoot through my house because my legs just can't do it alone.  Times like when I have to go to the bathroom, refill my coffee cup, let Kiva out, answer the door, or turn on the lights.  It's do-able, but it sucks and it's exhausting.  And I don't have many fellow RSDers with whom I can commiserate.  Most RSDers that I know have a spouse, a roommate, a parent, a sibling, or child that can help out at any given time.  I have a dog that licks my face when I cry. (her lack of opposable thumbs makes it difficult for her to help)  

Yes, I can always call someone to come over and help me, but I still have to get to the front door to unlock it and the unlatch the screen door as well.  (I'm a single woman who lives alone, yes, I keep my doors locked and latched!!)  There have been times in the past when every one of my "rescuers" have been unavailable and have I ever mentioned how much I loathe having to ask for help outside of my fam??  Ugh!!  During the Christmas season it's even more difficult for me to ask.  Everyone is busy shopping, baking, traveling, going to holiday parties, spending time with their loved ones ... I can't be the source of interruption.  I categorically refuse!!  So I suck it up and deal and do it my way.

Last night was a big holiday party night for my family.  Yesterday was also the last day to pick up my Ketamine sprays before they closed for 6 days.  (They're only open from 1 in the afternoon until 7 at night ... prime holiday party time)  It was below freezing outside at 5:30 when I got the call that my scripts were ready, the fam's parties were in full swing, and I was forced to rescue myself.  I bundled up (4 layers and a down coat), let the car idle in the garage (with the door up ... I'm not that dumb!!) for 15 minutes with the heater blasting and then Kiva and I made our way out into the cold, dark niiii...evening.  (Luckily, my SS check was directly deposited a day early so I was able to afford this adventure on my own.)

1st stop was for the K sprays, of which they only had 1 ready for me.  The 2%, but they ran out of K to make the 4%.  Super duper. <smh>  2nd stop, after glancing at the amount of gas left in the car, was the gas station.  Since there was no one available to stand in the cold to pump the gas for me, I put on 2 pairs of gloves and did it by myself.  As I was marching in place to try to stay warm, I got hit by a cold wind and I about lost it right there.  Green in the gills, I had one more stop to make at the other pharmacy that has normal hours and takes care of my stomach and upper respiratory shi....stuff.  I waited in their drive-thru for 20 minutes.  I had warmed up, but I was still partially seized from the onset of the chill.  And then my stomach growled.  I got my scripts, took one of my nausea pills, and opted to turn my night around, for the better.  Because I'm the only one that can help me.

After a quick stop at McDonald's and Redbox, Kiva and I came home and cuddled up for dinner and a movie.  Thank you, Avengers, for coming to my rescue when I was finally too weak to do it myself!!

I have faith that when I have to suck it up and deal, I can.  Even if it causes me more pain, I'll just keep on doing it my way because I don't have a choice.  I have faith that I will continue to "be it" for myself when everyone else that has a life is unavailable.  It's Christmas week, the Bombshell and the Munchkins will be here late tonight, I'm going out with the Fun Folk tonight for an End of the World party (cuz it's 12-21-12), and I am stoked to have the whole fam together for a while!!  I have faith that I"ll recover from all of this, I have to!!  I'm "it"!!

If I don't get a chance to blog again before Tuesday, may you all have a blessed Holiday Season.  Merry Christmas, Happy Kwanzaa, Happy Holidays, and to my Jewish friends that are wrapping up Hanukkah I wish you a Happy Movie Night ;) 

... Peace to you all and much love from Kiva and The Crazy Cripple!! 

All I Want For Christmas Is.........

All I Want for Christmas is a Cure.  That seems to be the general consensus among the RSDers on Facebook ... and in real life.  I can't even begin to describe how much I want a cure for them as well!!  No one should have to endure this kind of physical, mental, and emotion trauma ... ever!!  Especially the kids!!  Man, they need to have their childhoods!!  They need to be worried about tests, sports, sleepovers, what color bike they want for Christmas, boyfriends, girlfriends, younger siblings reading their diaries/journals, and who they're taking to the Winter Formal.  These kids do not need to be setting alarms to remember to take meds, or foregoing skiing or sledding trips because it's too cold or wearing boots would hurt too much or just the thought of the pain from falling down causes a panic attack.  They don't need to be worried about missed schoolwork from an overabundance of "sick days" when the pain is too bad to move.  That is my Christmas wish for all of my fellow RSDers, a cure!!

As for me, 21 years is a long time to live with something 24/7.  Even with a spouse/partner, there are minutes/hours/days of separation, even if it's while they're sleeping.  But living with RSD, and never having had the benefit of a period of remission, there has been no escape for me.  Even when I ran away to Hawaii (twice) my RSD was still with me.  When I got married, divorced, had to quit college, became an aunt, and coached volleyball and basketball - I had RSD.  Every time I've tried to move away from this town, I've had to come back because my support system of family and doctors and therapists are here.  The friends that know how to handle me social situations are here too (these are also the same friends with whom I feel comfortable enough to let my guard down, not something I do often).  I have had to reconstruct so much of my life over the last 21 years that everything I do, both consciously and subconsciously, revolves around minimizing pain, spending energy (spoons) wisely, and planning to the nth degree, no longer able to be spontaneous.  (I miss spontaneity ... just sayin'.)  RSD has become my livable life.  I don't remember what it's like to not be in pain, but I also don't know how I would react to not being in pain, if a cure was discovered tomorrow.  Before my RSD I was selfish, devious, crass, a daredevil, and rude.  RSD taught me how to be a better person, will I revert back to those old ways if I was painfree?  I sure as schnikes don't want that!!  

In the past, I have balked at making a Christmas Wish, only because I have learned to be grateful for the things that I already have; a hand-me-down car, a neighbor's old couch, hand-me-down clothes, a roof over my head, the love and generosity of dear friends, the love and support of a stellar family, a maniacal mutt, soap, coffee, hats, and a winning Broncos' football season.  I am a grateful girl, fer sher!!  But there is one thing that I don't have, and that will be my Christmas Wish for myself, if we survive the zombie apocalypse, that is.  I can only hope and have faith that it exists.  However, I refuse to put my wish into words.  I won't write it down and I won't speak of it.  It is in my head and my heart and I feel like if I "put it out there" that I'll just end up jinxing myself and I've had enough disappointment for one lifetime, thanks to having RSD.  

I have faith that good things will happen for all of us this Hollerday season, PainBeDamned.  I have faith that if I don't get my wish, I will continue to be grateful for the things that I do have.  I have faith that I will continue to live un-spontaneously and plan out the good times in which I am able to participate.  I'm taking a huge gamble on this Christmas Wish thing ... apparently it's what you do when you have "faith."

Did That Really Just Happen?

Oh what fabulous weekend I had ... sprained knee and all!!  Considering the fact that I'm uttering those words in December, normally one of the coldest and snowiest months of the year in Colorado, is nothing short of a miracle!!  For a change, the Skank (aka Mother Nature) has blessed me with an unbelievably warm Hollerday season so far ... now that is soon to change, according to the Weather Channel, but I rode the heat wave like a champ!!  Speaking of "Champ," did you see that freaking Bronco's football game on Sunday????  I WAS THERE!!!  Champ (Bailey), PFM (Peyton Freaking Manning, for those of you living under a rock), and the boys are the AFC West Champs!!  And I ... WAS ... THERE!!!  I tailgated, I walked, I chanted, I thwarted, I cheered, I screamed, I laughed ... I was at Sports Authority Field at Mile High!!  And we won!!!!!!  It's the little side stories that make up the adventure though, and I had quite the adventure leading up to that big AFC West title finish ... And here it is...

About 6-ish months ago or so, ColoAngel invited the Red One and I to become members of a private Facebook group of Denver Bronco's fans, which, for the blog, we'll call the "Knuckleheads."  We talk about all things Bronco and sometimes life in general, when one of us is feeling down, but for the most part it's all Bronco banter!!  The members span the entire country from Florida and New York to California, and Montana to Oklahoma and Texas, but the majority of us live right here in CO.  Anyway, we finally had a meet and greet with about 20 of us at a Denver restaurant on Saturday.  Knuckleheads came in from Montana, Washington, and the western slope.  We basked in the glow that is Mrs. Barrelman!!  Yes, Mrs. Barrelman is a Knucklehead too and she showed up with all sorts of photo albums and swag!!  (I came home with bumperstickers, coasters, and a Shannon Sharpe trading card.  She is, hands down, the sweetest woman I have ever met!!)  She also invited us all to join her for tailgating before the game on Sunday.  Almost everyone at the table, including the Red One, had tickets for the game.  There were only 2 of us that weren't going, me (because it was December and who knew that it was going to be warm enough for me to be outside) and Otis, a childhood friend of another Knucklehead.  The GM of the restaurant had heard us talking about the game, saw me pouting when the rest were making plans, walked over and told me that he knew of 2 south stands tickets going for face value ... $80!!!  Otis' friend heard the conversation and offered up the other ticket to Otis.  I had hoped to either be able to take Houdini or my Porno Dealer (they know how to handle me and my RSD in crowds, and they are both huge Bronco fans as well) but it was too late and I was not about to miss an actual Denver Bronco divisional championship game, are you kidding me???  Otis seemed like a nice enough cat, mellow, covered in facial hair, and a Bronco fan.  The plan was that I would be the DD to and from Denver with the Red One and her friend from work and I would meet Otis and the GM's brother (he had the tickets) at the south stands gate.  OMG I was going to the Bronco's game!!!!

Sunday ... I donned my cat suit, a pair of jeans, crazy socks, a long sleeved t-shirt, and my Champ Bailey jersey.  I tied a warm hoodie around my waist, put on my walking tennies, grabbed my cripple stick (cane) and I picked up the girls and headed to the Mecca!!  Mile High!!  (It isn't the same as the old Mile High, that was the real Mecca, but it's a close 2nd!!)  After about 2 miles of walking we found Mrs Barrelman and the rest of the Knuckleheads, minus Otis and his friend.  We hung out, we took pictures, we chanted, they were drinking beer, wine, and orange margaritas made in an orange chainsaw blender.  I drank Pepsi.  I was to meet Otis and the GM's brother at 1:30, so at about 1:10 I had to start cripple-walking my way up the hill.  As I was handing the brother my money (borrowed from Houdini and my parents) Otis stumbled up reeking of beer.  Not even knowing this clown's last name, I had to talk him through getting out his wallet to pay for his ticket.  We got inside the gate and made our way up the ramp to the 2nd level.  As we were walking up the ramp, he tried to make me jump on his back.  (Yeah, there's a genius idea!!  Let's put a woman who's already in intense pain on a drunk's back and make them go uphill!!)  I stopped to buy a Coke and when Otis tried to buy a beer, he was denied.  Yes, I laughed ... openly.  Up we went to the southeast side of the JumboTron ... to the very last row!!  The Red One and her coworker had seats on the west side, ColoAngel, her dad, and a few Knuckleheads were on the northwest side, Mrs Barrelman was on the northeast side, and the rest of the Knuckleheads were on the southwest side, right above the tunnel where the players come running out.  

Now here's where the story gets awkward, at no time, and in no fashion, was this ever a date.  But that didn't stop Otis, and I thwarted his every advance.    Every time he so much as tried to touch me, he got his hand slapped.  Six different times he asked me, "So what's your story?"  Five times he asked me, "Why the cane?"  I kept reminding myself that I never had to see him again and that I was at a Bronco's game!!!  I told myself that this was a test as to how I could handle myself in a large crowd with no one to lean on or assist me, if I should need it.  With 4 minutes left in the game, Otis decided to go down to the restroom ... and never came back!!  To say the least, I was relieved!!  The other fans around me laughed when I leaned back in my seat and said, "Oh thank God!!"  They thought it was a date too but, in no uncertain terms and with all of the humor I could muster, I set them straight.  The gentlemen that were sitting on the other side of Otis walked down the steps with me after the game, calling me a "good sport" and saying "true Broncoholic beats an alcoholic any day of the week."  The Red One and I had already worked out where we would meet after the game, so after a "quick" stop at the restroom, I headed down the ramp ... solo!!!

I have faith that I will never put myself in that kind of situation again!!  I have faith that Champ, PFM, and the boys will continue to amaze us throughout the playoffs!!  I have faith that, should the situation present itself, I can absolutely handle myself in a crowd, with my held high, smiling through the pain and anxiety.  I got to go to a Denver Bronco divisional title football game in December!!!!!!!!  And I have RSD!!!!!!  Those kinds of amazing things just don't happen every day!!  I have faith that I will lie on my couch like a lump of poop for the rest of the week, because after I damned the pain, it damned me back.  But I can writhe and cry with visions of greatness in my memory!!  I saw PFM play football with my own eyes!!!!       

Duck, Duck, Duck, Goose

If it looks like a duck, walks like a duck, and quacks like a duck, it's probably a goose.  At least that is what living with RSD is like.  Nothing is really ever what it appears to be when it comes to our bodies and immune systems.  It looks like a cold?  Nope, it's Bronchitis.  It looks like heartburn?  Nope, it's just GERD.  Feels like poor circulation?  Nah, it's Reynaud's.  Just feeling a little flu-ish (constipation and vomiting)?  Huh uh, how about GastroParesis.  Now these aren't all symptoms from which I, personally, suffer (although 2 are often mine, I know other RSDers that are afflicted by the other 2), these are just a few types of dysfunctions that can happen as a result of having RSD.  And here I sit, with my right leg propped up on a pillow, 6 weeks after the initial injury, a recent diagnosis of 'sprained knee,' thinking to myself, "What's the 'goose' this time?"  And then that thought turns into, "And just what am I going to have to endure, this time, in order to find out?"

As promised, after a week (more like 2) post-diagnosis, I called my GP back to tell him that my knee was no better, but also that it hadn't gotten any worse.  The RSD flares in my lower leg and foot, however, are beginning to grow in intensity.  He instantly referred me to a orthopedic specialist.  I haven't been to an ortho since college!!  (Keep in mind that I got an early RSD diagnosis, so I didn't have to go through the entire gamut of specialists 21 years ago.)  Although my town is actually a city, because my family has been rooted here for so long, there are still close small town-like relationships.  Case in point:  The ortho I will be seeing on Monday did all 3 of Houdini's knee surgeries, and both of the Bombshell's shoulder surgeries.  Both of my siblings babysat his kids, and my Mom taught a couple of his kids in Kindergarten.  But ... Does he know about RSD?  Does he know that he can't tug on or try to manipulate my knee?  Does he know that he'll have to be careful about the way he even touches my leg because of my hypersensitivity?  Will he care?  Will the nurses care?  Will he send me in for x-rays and an MRI?  Aaaaaand that's as far as I'll let my brain wander!! If I go any further, the anxiety that I already feel will only turn to panic.  Breathe Jennifer Lynn, breathe!!!

Now, this is where Biofeedback comes into play for me.  With all of the added pain in my leg, and the new doctor to train, and the thought of missing out on Hollerday action with the fam or the Fun Folk, my anxiety level is pretty freakin high!!  My stomach is in knots over the mere possibilities of what could be ahead of me, I have mini hyperventilating sessions, I can't sleep, I can't eat, and then all of my potential good days go to pot because I have needlessly wasted spoons on worrying.  Worrying breeds stress and stress breeds flares and pain spikes.  This is when I have to focus my breathing.  Most people, when in an amplified state of pain, hold their breath when the pain is at it's peak.  Whether consciously or subconsciously, it's like a natural defense or a wall.  I used to do it all of the time.  I had massage therapists, physical therapists, and chiropractors that had to yell at me to breathe ... until I learned Biofeedback.  Nowadays people sometimes think that I'm sleeping when, in reality, I'm pinpointing my breaths, making the hot air balloon in my mind rise over hills and houses and descend below the cloud lines as it floats thru my mind's sky until I can keep it floating levelly.  When the balloon levels out, my pain spike is over, my eyes open, and I didn't need drugs to get thru it!!!  (Admittedly, yes, I've purposefully crashed the balloon into trees and barns just to see what would happen.  Cuz that's just how my mind works.  Crashing, albeit imaginative, doesn't help the pain ... just so you know.)  I must be honest though, I sometimes (not often) forget about this trick in my bag.  Last night had me twisted in my britches with worry and anxiety.  I maybe got 2 hours of sleep total.  As soon as I got that 1st cup of liquid heaven down this morning, it hit me like a ton of bricks. Breathe, you dummy!!!  

As of this morning, my toes on my right foot are curling under and are unable to tolerate socks, the vice-grip flare in my calf is now up to an 8, and my knee remains at a 6.  However, I have faith that I will continue to breathe!!  I have faith that the tricks that RSD has taught me over the last 21 years will get me thru this new little speed bump.  I have faith that I will take printouts of what RSD is about to the ortho on Monday to help expedite his education and awareness.  I have faith that I will not let the pain hinder all of my December plans, but rather I will breathe thru all of my commitments and continue to plan my attendance of events wisely ... Beginning with a bunch of Denver Bronco nuts gathering for a pre-game dinner/get-together on the 1st.  It can be a great life, RSDers, as long as you remember to breeeeeeeathe!!!!!

Hollerday Battle Picking

It's Thanksgiving Week and I have so much for which to be thankful.  I have coffee, I have an absolutely amazing and supportive family, I have a dog that adores me as much as I adore her, I have coffee, I have some of the best friends on the face of the earth, I have a roof over my head, I have coffee, I'm still sober, I have RSD, I have great doctors, I have a vehicle that is dependable, I have food in my fridge, I have coffee, I have toilet paper, I have a heated mattress pad and electric blanket, I have great neighbors ... and yes, you read that right, I said that I am thankful for my RSD.

Next year I will have had RSD for half of my life.  For almost 22 years I have lived with intense, burning, freezing, zapping, aching, and nauseating pain 24/7/365.  I have experienced insane swelling, lovely shades of red and purple appendages, protruding veins, mild seizures, muscle spams, Etch-A-Sketch Brain, and tremors.  I have never known remission, like some of my fellow RSDers have.  Apparently, I'm a lifer ... a 5-Star General in the war against pain, having never received the coveted demotion.  I have been forced to prioritize on a level that very few can even fathom.  Don't get me wrong, I am not thankful for the pain, nor the other side effects of the disease, but I am thankful for what RSD has taught me.  I have learned to think ahead, to plan for the unexpected, to breathe, to be grateful for the little things, to use my imagination, and most importantly, I have learned to prioritize.  

Picking my battles was never something I did when I was younger.  Even in the first years of my RSD, I continued to do what I wanted when I wanted.  I was 22, sue me.  I also caused my RSD to spread, so I don't recommend that.  I did more than my fair share of drugs, prescribed and otherwise.  I was in so much pain that I did everything I could think of to go numb (to no avail), when what I should have been doing was practicing patience and acceptance ... and breathing.  Absolutely nothing outside of a cure or remission will completely take the pain of RSD away.  We are given medication to lessen the pain and make our lives a little more livable.  And we are given free will as to how we handle the rest.  I have made the conscious and mature decision to become a Battle Picker where my RSD is concerned and surprisingly, it has trickled over into the rest of my life.  Factor in the Spoon Theory and I have every tool for living at my disposal.

"Patience" ... I can't do that right now, but if I lay low for a little while, I might be able to do it later.

"Acceptance" ... I used to be able to do that and now I can't.  That doesn't mean that I can't find another way to do something similar.  Even if doesn't bring me as much joy, there is still joy to be had.

"Breathing" ... If I hold my breath, I cut off my own circulation and the pain spike gets worse or spreads.  If I continue to breathe thru the pain, the spike doesn't last as long.

By picking my battles and thinking in terms of "how many spoons do I have for today?" I can map out a day and sometimes even a week.  But I have to be able to plan, to save, and to rest.  I know my body well enough to know how much stress, physical and emotional, that I can tolerate at any given time.  So ... as we enter into this season, I will begin making my Hollerday lists to reduce my emotional stress levels and plan for my physical ones.  My spoons are always limited, so if Mom wants to go shopping, I need to have a couple stashed for her.  If Houdini decides that he can afford the time and we can drive to Kansas for the Munchkins' birthday, I need to have spoons ready for that.  The Bombshell and her fam will be here for Christmas, so I absolutely can not afford any more pain spikes or that will take spoons away from the Munchkins, and that is just unacceptable for me.  Even if it means saying "no" to something fun that I want to do, I must always remember what the activities are for which I am saving my spoons.  Hence the lists, because I don't trust my Etch-A-Sketch Brain to remember everything.  (ie: a night of dancing with the Fun Folk or <look at list> Small Business Saturday shopping with Mom?  I can't do both, so which is more important?  DUH!!  Mom!!)

I have faith that I will honor my priorities, painbedamed.  I have faith that I will take extra care when devising my lists this year because I am also dealing with a sprained knee, so my spoons are even more limited.  I have faith that I will do the majority of my shopping on Cyber Monday because being a pinball in a crowd of insane shoppers on Black Friday is only a recipe for more pain spikes and flares.  I have faith that I will get to see most of my fave Twigs (the name I've given the extended family) on Thursday and that is always a hoot and a half.  I have faith that these are the things on which I will focus today, instead of the screaming pain in my knee and the freezing vice flare that it's causing in my lower leg and foot.  

Yup, Happy Hollerdays!!

Awareness Raising, Jenn-Style

Well, it's here and it's in full swing ... Nervember is RSD Awareness Month!!!  This year I have challenged myself to bring my awareness raising skills to whole new level ... and so far so good, if I do say so myself.  Last year's goal was to inform 2 people per day, so this year my goal is to inform 3 new people per day of the existence of Reflex Sympathetic Dystrophy AND to make it fun, even though the disease itself is far from "fun" ... (30 days x 3 people per day = 90 newly aware people).  Today is the 10th and I have already exceeded my goal for the whole month ... and then some!!  I have had a ton of fun doing it, and I'm not done yet!!  It's not about beating the information into people's heads, it's not about scaring people with the nitty gritty details, it's not about prying people away from their paychecks and allowances.  It's about explaining the existence of the disease, the pain, the invisibility that comes with it, and most importantly, it's about showing them that this disease has not beat me and that there is hope in my future as long I as I have faith in that hope!!

The last week of October I encouraged all of my family and friends to wear orange in Nervember ... and then I realized that I, Jenn Samson, had no orange winter wear!!  Can you believe it??  I was appalled at myself!!  My Mom was in Kansas visiting the Bombshell and the Munchkins, so instead of hauling ass over to the Castle to cry on her shoulder, I sent her a text expressing my disdain for myself.  (This is how amazing my Mom is...) She was already scheduled to fly home on the afternoon of Sunday Nov. 4, and by Sunday night she was at my door with 3 bags!!  1 from Kohl's, 1 from Dillard's, and 1 from Target.  (I hate shopping!! ... I know, I'm rare!!)  I can now wear orange for a whole week during the fall/winter without wearing the same thing twice!!  (And of course there were also 3 new pairs of crazy socks in one of the bags ... cuz Mom is just that cool!!)

Monday Nov. 5 was International RSD Awareness Day.  I started the day by modeling my new orange clothes for Kiva.  I let her pick which top I would wear ... and then I had to de-fur it with masking tape.  After spending the required spoons to shower, dress, and do my hair and make-up, I headed to Walmart to buy 2 spools of orange ribbon, a box of 200 tiny safety pins, and a small pair of scissors.  While the lady was ringing me up at the register, she asked if I was "sewing something."  I laughed and then I took the scissors out of their packaging and the removed the tape that was holding the ribbon in place on the spool.  I cut a piece of ribbon, took a safety pin from the box and handed it to her along with the gift card I was using to buy the stuff.  I told her that it was RSD Awareness Month and I was about to drive all over 2 counties to Ribbon Bomb people.  She laughed and then asked me about RSD.  I told her that it's a painful nerve disease that has been around since the Civil War and that there is no cure for it, as of yet.  As she started to pin the ribbon to her blue apron, she asked what the initials stood for.  Without batting an eye, I replied, "Really Shitty Disease."  She abruptly stopped pinning the ribbon and looked at me like a deer in the headlights.  I smiled and told her the truth.  Whereas it stands for Reflex Sympathetic Dystrophy, it is also a Really Shitty Disease.  I informed her that everything that nerves come into contact with can be affected and it causes intense pain 24/7/365. Some sufferers have it localized to one or two specific body parts, but some sufferers have it throughout their entire bodies and even some have had it affect their organs.  And then I told her that I have been dealing with the disease for 21 years, the last 10 of which have been full body.  She finished securing the ribbon to her apron, smiled at me, and sincerely thanked me for "bombing" her with awareness.

Next stop, Ziggi's Coffee House!!  (What?  Thought I wouldn't?)  I ordered a small Americano with an extra shot and extra room for cream (so basically 4 straight shots of espresso ... and cow juice) and, as I explained RSD in my "adult" fashion, pinned orange ribbons on all of the employees and a few patrons that were brave enough to ask me what I was doing with "all of the orange."  10 people Ribbon Bombed ... <BOOM>

Then I was off to my Dad's law office.  It's a small firm, but they're usually game to help me out with my crazy shenanigans.  Even though they are all familiar with RSD (thanks to me) they were all more than happy to sport the ribbon.  <BOOM> 7 more bombed.

On my next stop I lost count of the number of ribbons that I handed out.  While I was sitting in the parking lot of the school where my brother teaches, mentally preparing my body for the onslaught of hugs from all of the Little's, I pre-cut 50 ribbons and shoved them in the pockets of my jean jacket along with the box of pins and the orange Sharpee that I keep in my car at all times.  I put the remaining spool of ribbon in my purse but left the scissors in the car ... it's a school, they have their own scissors.  I walked(ish) into the building and bee-lined for the office to sign in ... in orange Sharpee.  After securing the yellow name tag to my jacket, I reached into my left pocket and pulled out 2 ribbons and 2 pins for the 2 office ladies.  These women watched me go from "good" to "un-good" during volleyball season.  They were so happy to see me having a "good day" and they were more than willing to sport the orange.  The school nurse came out of her office to see what the giggling was about.  Um ... she had never heard of RSD!!  A Registered Nurse!!  We went into her office, I handed her a ribbon and a pin as she started to Google RSD.  I stopped her.  I took a sticky note from her desk and wrote down (in orange Sharpee) RMRSD.org and RSDSA.org.  She graciously thanked me for informing her and apologized for not knowing what it was.  She really felt bad about that.

On to the 2nd grade hallway and a quick stop at Coach Chez's classroom to say "hi.".  Even though she's been aware of RSD since the 1st week of vball, she saw the ribbon that I had for her in my hand and grabbed it.  I love her!!  It was then time to walk up the flight of stairs to the 5th grade hallway and Houdini's classroom.  The school has allowed me access to the elevator, but I was on a mission, so I hoofed it up the 23 steps.  4 minutes later I walked into my brother's classroom.  (I hate stairs.  I really really do.)  It was the end of Rotation 4 and they had just wrapped up their Language Arts lesson.  Houdini and 26 fifth graders ... ribbon bombed!!  The bell rang and kids were hugging me and high-fiving me as they left the room (ow, but worth it).  The homeroom class started filtering in and, seeing the other kids with orange ribbons, asked me what was going on.  There were about 10 kids that already had the ribbons from the previous class, so I was able to bomb 16 more kids with them.  Before the end-of-day bell, I went across the hall to AP's room.  There were a few orange ribbons already (from Rotation 4) but AP and the rest of her class needed them too.  I had to grab a pair of dulled 5th grade scissors and cut more strips from the spool I had taken from my purse.  (this was where I lost count) ... Next stop on the 5th grade tour was JC's room.  Again, there were only a few orange ribbons so I had to fill in all of the gaps.  The last bell rang before I could I could get to BR's room, but I left enough ribbons and pins for her to hand out the next day.  I was proud of the fact that I was only a minor distraction on Monday.  I've been known to walk into a 5th grade or middle school classroom and sit with the volleyballers during a lesson.  The rest of the teachers love me, as long as I'm containable.  But then another plan was born ... <dun dunt duuuuun> ... Houdini wanted to spread the word throughout the school that Friday would be Orange Day since other teachers and kids were bummed that they didn't know about wearing orange.  (He made it happen, by the way.)

My body wanted me to be done but I still had 1 more place to Ribbon Bomb ... My ColoAngel is the office manager at call center that's about 15 minutes from Houdini's school.  I used up the rest of the 2nd spool of orange ribbon (and my last 3 spoons) on my girl, the supervisors, the sales reps, and the maintenance reps (and then the drive home.)  But my International RSD Awareness Day wasn't over yet.  I was being taken out to eat by my ColoAngel and Bosley was meeting us!!  We hit the B-Dub-Dub for greasy burgers and FU RSD toasts.

From the moment I stepped into the shower until the moment I got home from dinner it was go-go-go-go-go.  10 highly productive hours, approximately 120 miles, 2 spools of ribbon, and a full belly later, I was toast ... for 3 days.  Even though they were painful, they were a happy 3 days.

Aaaaaaaand then on Friday (yesterday) I got to do it all over again!!  I donned my new orange corduroy pants that I'd soaked in fabric softener for 2 days, and shuffled my oostakaka back to the school for Orange Day.  Painbedamned I was not missing this day!!  I'll let the pics speak for themselves, but the day was a huge success and I was able to come up with a G(ish) rated version of my explanation of RSD for the kids.  I told them to imagine what it feels like when you're really super cold and your teeth are chattering and your whole body is shaking.  And then I told them to imagine having a really really bad sunburn at the same time.  The kids' eyes were bulging as I kinda acted it out in front of them.  And then I quickly said, in a pretty loud voice, "now hit your funny bone!!"  Yes, there gasps and even a couple little screams ... from boys.  I got my point across!!  You need to be careful when describing something like RSD to children.  They are so susceptible to influence at this age that if you give them too much specific information, they tend to over think their own maladies and start claiming that they have the disease, at which point they can manifest symptoms.  It's scary but true.  At the end of the day, one of the boys came up to me and asked if it would be ok if he made an awareness video for RSD.  He said that he could post it to his mom's Facebook page and to his YouTube page.  I was speechless ... and amazed ... and overwhelmed ... and honored ... and blessed ... and you're damn right I said "YES!"

These are just a few of the good things that come from raising awareness!!  I have faith that I will continue on my mission ... as long as I have a couple of days in between for recovery time. I also have faith that I will now take a "bingo nap" with Kiva, my heating pads, my K-spray, Nicholas Cage movies, my quilt and a nice hot cup of coffee ... with cow juice.

 

Halloween, Crazy Cripple-Style

As a kid, teen, and young adult, Halloween was my absolute favorite holiday!!  I loved all of the decorating we did at the house when I was little.  It wasn't elaborate, gaudy, or really gory, but it was fun, crafty, and homey.  We would put Kleenexes over of Tootsie Pops, tie yarn bows at the sticks, put ghost faces on them and hand them out to the trick-or-treaters.  As an older kid and teenager, I lived for haunted houses, hay rides, corn mazes, and creating my own costumes.  We would set up haunted houses in our basement and then, after we moved to the farm when I was 12, we started hosting them in the old barn.  Peeled and oiled grapes to feel like eyeballs.  Cooked and oiled spaghetti to feel like intestines.  Chilled and oiled a whole head of cauliflower to feel like a brain.  Using old stuff we found in the tack room of the barn, we made torture chambers.  We'd have a costume ball in the barn loft, and then we'd have a huge bonfire in the old corral.  When I was in college, I didn't give a crap about anything but the parties (sad but true story).  The rest of my Halloweens have been hit and miss, courtesy of RSD.  Tonight my damn disease will celebrate it's 21st Halloween.  This morning I began reflecting on how I've had to change to my life so that I can still enjoy my, now 2nd, fave holiday.  (A very close 2nd behind Independence Day.)

Haunted Houses, Hay Rides, Corn Mazes ... yeah, those are all out.  Gone.  In the history books.  Since I can't control the actions of other people, having someone touch me unexpectedly (be it a ghoul or a friend) is just bad news for all involved.  It causes me a sudden spike in pain and I physically lash out as a reaction.  I have broken people's noses, bruised their ribs, given a few black eyes, and, I have also not gotten called back for a couple of 2nd dates.  The last time I went on a hay ride I was 25 and only my right hand, arm, and shoulder were affected by RSD.  It took me 3 nerve blocks (without Ketamine) and a whole month to recover from all of the jostling.  Now that I have the monster in my whole body, I don't even want to try to think about the recovery efforts that would be needed if I tried it again.  As for Corn Mazes, it's a combination of the previous two activities.  Don't touch me, don't jostle me ... without my permission, that is.

I have always had creative costumes though.  Only once did I actually buy an entire costume (It was a ridiculously warm Halloween and I opted to be Nefertiti since I didn't have to cover up body parts to combat the Colorado cold.)  My Mom, being the resident "expert" seamstress and former Kindergarten teacher, has proved herself to be a huge asset for me in the "cute costume" category, the rest were all my own creations.  All in all (that I can remember, anyway), I've been a pumpkin, a gypsy, a black cat, the Ace of Spades, Reeces Peanut Butter Cups, Marcel Marceau, static cling, a bag of chips, a dead Nebraska football player (complete with buffalo hoof prints on the chest), Tippy Hedron from The Birds, a bull rider, Joan Jett, an albino Nubian princess (I never said that my costumes were all PC), a zombie devil, Morticia Addams, a zombie mermaid, a sexy librarian, Little Red Riding in the 'Hood, a fallen angel, and last year I was Coach Sue Sylvester from Glee.  Yes, I am one of those that hands out candy to trick-or-treaters wearing a costume.  (and I always give bonus candy to the kids who make their own costumes!!)  This year, due to all of the recent hand-me-downs that I've received from her, I'm dressing up as my sister, the Bombshell!!  (shhhh ... don't tell her!! She doesn't know yet!!  But I'm gonna hafta pad my flat butt and boobs a bit ... heh heh)

Last night I carved 3 pumpkins.  2 for me and 1 for my folks' house.  This is one thing that, regardless of pain levels, I absolutely have to do ... for my soul!!  If, for whatever reason, I am unable to hold a knife or my mechanical carving tool, all I have to do is call my Dad or my brother, Houdini, and one of them always comes to my rescue.  But last night I did it all by my little own self.  There's The Screamer, Frankenpumpkin, and Mater the Friendly Ghost.  I have a sign in my front yard that says "The wicked witch lives here" and I have purple-ish/black lights strung up in my front window.  I found a neat idea on Pinterest to cut eye shapes out of used up toilet paper rolls and put glow sticks in them so I can hide them under my front bushes to make it look like creepy creatures.

See??  I can still have fun on Halloween!!  Granted it's not the kind of fun that I used to have, but I have accepted that it's "different kind of fun"!!  I have faith that I will enjoy Halloween 2012 (Kiva, not so much).  I have faith that I will continue to find ways to have fun without causing myself undue pain.  I have faith that when I awake in the morning I will ready and raring to go for International RSD Awareness Month!!  So please, don't put away your orange stuff after tonight!!  Keep the Orange alive for the whole of November!! Monday November 5th is International RSD Awareness Day, so make sure you're wearing orange!!  And ... if you wouldn't mind, wear an orange awareness ribbon with your favorite/familial RSDer's name on it.  (easy peasy to make, just go to your local fabric store for a small length of orange ribbon, a pin, and grab a Sharpee!!) HAPPY HALLOWEEN, Y'ALL!!!

From 1 to 100 to 16 ... BOOM!!

<dunt dunt duuuuuuun> One more day until my Ketamine nerve blocks!!  I'm excited for how I will feel by the end of the weekend!!  (yes, I realize it's only Tuesday)  However, the anxiety that precedes the next 4 days is beginning to take it's toll on me.  Even though my procedure only takes about 3 hours, recovering from all of the anesthesia and injection spots is rough, and my recovery rate isn't what it used to be (ugh).  The good news in all of this is that my doc was able to authorize another refill of my Ketamine nasal spray (4%) yesterday and I was able to get 6 hours of normally interrupted sleep last night.  I'll take it!!  It's amazing how sleep can calm the nerves, isn't it?  Today I will finish getting my house picked up (not cleaned, I don't have enough spoons), my elastic banded sweatpants, crazy socks, and uber-soft long sleeved shirts washed and dried (no folding or putting away ... again, not enough spoons.), and my sofa surfboard padded and prepped for my bony butt.  HUGE shout-out to my ColoAngel for leaving her hubby's side for a night to come take care of me!!  And another shout-out to my Jenn-Porn Dealer for offering to be our backup caretaker!!  I really do have the best friends on the planet!!

But in bigger news ... 100 days until Crazy Sock Day 3!!!!  Time for the Warrior Mama, the Penguin, the Sassy Warrior and myself to get to work!!  Well ... sort of.  First, we must brainstorm!!  I went ahead and started a Facebook event page, 3rd Annual Crazy Sock Day, to get the ball rolling. (Feel free to join!!)  I'm also thinking of starting an awareness community page for crazy socks.  It will not, I repeat not be a support group page or a page where people can pose questions and share treatment options.  This will strictly be an Awareness page where we can post pictures of socks year round to show how we're making this invisible illness visible. Trust me, if I do start the page, there will be absolutely NO drama allowed and all drama queens (and kings) will be booted if they try to make the page what it's not. <steps off soapbox>

If you, the few loyal readers of mine, have any suggestions for this year's event, please feel free to leave your suggestions in the comments below or send me a message on FB.  Last year we doubled the participation of the 1st year.  This year I hope to triple what we did last year.

We are also 16 days away from the start of RSD Awareness Month (November).  Time to dust off your orange ribbons (and socks) and get the word out ... RSD EXISTS!!!  Sheesh, what a busy fall and winter I have ahead of me!!  But I am only 1 person (with multiple personalities, of course)!!  I can't do this alone.  I need help!!  Your help!!  Help me/us spread awareness for RSDers worldwide!!  Wear orange, wear crazy socks, post your pics!!  The more awareness we raise, the more funding we can get for research for a cure!!

I have faith that I will survive tomorrow and, hopefully, by Saturday, I will be ready to kick oostakaka and take names!!  I have faith that CSD3 will be the biggest awareness event to date!!  And I have faith that RSD Awareness Month will burn brightly with orange!!  We will not go gently into that good night, we will rage against the dying of the light!! ... now, where'd I put my bullhorn??

From the Desk of Kiva The Tattler

Hi-ho!!  Kiva the dawg here to tell on my Mommie.  She's sick, or doesn't feel well, or something.  If you know my Mommie, then you know that she forces herself to go to bed every night and she forces herself to get out of bed, and stay out of bed during the day.  Ever since I've had her as my Mommie, she has done this.  Even when she's sick or in an abundance of pain, she still makes herself get out of bed and go to the couch.  But this morning she went back to bed at 7a.m.  She hasn't slept much for the last 2 nights, so I did my duty and laid down with her in the hopes of offering some comfort.  I woke her up at 8:30 when I heard her phone ringing in the other room.

I have seen her stub a toe, break a fingernail at the quick, bump her funny bone, knock her knee, slip and fall, and I even seen her fall off a chair.  She screams, she cusses, she crawls back to the couch, she medicates, and she copes.  Very very rarely does she cry.  But for the last 3 days, it's been different.  This pain is on her insides.  Saturday she thought it might be a kidney infection or a kidney stone.  But yesterday afternoon the pain had subsided for the most part ... until we went to bed last night at 9:30.  Then it jumped from her left side to her right side.  I couldn't even get on the bed to tuck her in because she was repositioning herself every 30 seconds trying to get comfy.  But it never happened.  She got up at 12:30a.m. and watched a Decoded marathon from the couch.  At 4 she tried to go back to bed again.  At 5:30 she finally gave up and got up.  Even Flo, her new coffee maker, wasn't awake yet.  You never ever ever wanna hafta watch my Mommie wait for coffee in the morning.  She turns from Frankenstein into Godzilla in .003 seconds.  Add to that the fact that she doesn't feel well and ... let's just say that it would be more pleasant to be an observer of a horrific train derailment.  At this point, she claims that it's just pain.  She has no fever, no trouble going to the bathroom, and no discoloration of her urine ... just knife twisting pain in her lower back that she knows is not RSD pain.

The RSD pain, however, has her terrified of getting into a car.  So she won't go to the doctor or to the ER.  She has finally gotten most of her flares under control and does not want to reignite them.  I don't blame her, but a car ride would have been fun for me <sigh>.  Mommie's Mommie brought over some cranberry juice this morning and Mommie opted for drinking that stuff instead of her 2nd pot of coffee.  (This is how I really know that something's wrong.)  Later this afternoon, Mommie's Mommie will go get her pain meds and drop them off too.  Whew, Mommie's lucky that her folks got back from their vacation when they did, or she'd hafta do all of this on her own.  Poor (but fortunate) Mommie.

I have faith that Mommie will get better.  She only has 9 days left before her Ketamine blocks and then she can focus on recovering and Halloween ... and Club Volleyball!!  I have faith that she will turn to me for comfort and I have faith that I will be there for her when she does.  She's the only Mommie I have and I must take care of her.

Yesterday I Cried ... Twice

If you know me, then you know that I don't usually cry over physical pain anymore.  I suck it up and deal.  But if you jerk on my emotions, you're gonna see a waterfall.  Yesterday I cried ... Twice!!  No joke!!  The 2nd time was because the "A" Team girls pulled out a beeeeeautiful win in their 1st playoff match in the history of the school.  I was so proud of them (and Houdini) that I just couldn't contain my emotions!!  (I'm hoping that I didn't cuss, but I'm not sure.)

But the 1st time that I cried yesterday is what still has my heart reeling.  I was just finishing up in the Ziggi's drive-thru on my way to school when I got a text from Chez (the sweet face that coaches with Houdini and me.)  She said something about a poem that brought her to tears.  I asked her what she was talking about and she told me to check my email.  So I drove about a block and then pulled over to check my email on my phone.  It was an email from the dad of one of my "C" Team girls.  Apparently she had a poem assignment for her 6th grade Language Arts class a few weeks ago, and the topic for her poem was ... um ... me!!  The dad prefaced the poem by telling me that his daughter has no idea that he was sending it to me so I have to go around pretending that it didn't happen.  Seriously??  Ugh!!  But because I love her so much, I am willing to play dumb!!  <sigh> Ok, here goes....

My volleyball coach

Although she yells and screams and scolds,
Inside she has a heart of gold.
She pushes us to do our best,
And puts our volleyball skills to the test.
She tells us constantly to move our feet,
So we can be true athletes.
She loves us all,
We love her back,
She knows what were good at and what we lack.
But All the time something inside,
Hurts her but still up she climbs
She gives everything she has for us,
that shows she's really selfless.
She doesn't sit, she doesn't give up,
She gives everything she has to us.
And with her help and all the rest,
We try to always do our best.
We won't lose,
Not today,
That's because we're PRA.

Her teacher had better have given her an A for that or that teacher and I are gonna go rounds!!

Yeah, I'm a blubbering idiot again.  I'd really like to be able to blame the cold weather that came in last night, but I can't.  I blame HER!!  ;) ... in the best possible way, of course.

Today I am down to 7 spoons total.  Our semi-final playoff match is 48 miles away but I only have to drive to the school and back home.  Houdini will drive me to and from the match (Thank God!!).  I still haven't showered, and I'm not entirely sure if I will.  I may just spackle my face and don a hat.  I really really hate RSD ... I hate cold weather ... I hate that my girls have to see this side of me.  But the fact that they recognize, to an extent, what it is that I go through for them humbles me.

I have faith that I will suck it up and deal today ... again.  I have faith that I will find a way to manage the few spoons that I have so that I can be fully present in today's activities.  I have faith that another trip to Ziggi's will help get my head right, which will force my body to follow suit.  I have faith that I will keep my friends close and my meds closer.  And I have faith that I will re-read this poem 2 or 3 more times, tears included, to remind myself why I do what I do!!  Painbedamned, I am a warrior, a fighter, a survivor, and a coach!!

Managing Spoons

The official countdown has begun.  2 weeks from today I get my bi-annual Ketamine Nerve Block Series.  Unfortunately, it's always the last few weeks before my blocks that are the toughest to manage.  Add to it the temperature changes of fall, the stress that accompanies Championship Week in volleyball, and the fact that we're supposed to get the "s" word anytime between tonight and Saturday, and I might as well not even get out of bed.  (My body is saying "snow on Friday night."  I am not amused.)  People have asked me why I don't get blocks more often and the answer is simple ... I hate them.  I hate how the drugs make my head and tummy feel.  I hate that I have to be knocked out for the procedure.  I hate that I have to get nine inch needles stuck in both sides of my neck, both armpits, both sides of my spine, and the inside and outside of both hips.  I hate that it takes me about 5 days to completely recover from this 3 hour "vacation."  I hate that parts of my body go completely numb and I hate that I have no control over them.  (seriously, you try sitting on the toilet while someone holds you upright because you can't feel your own ass and because of that, you fall over into walls, sinks, bathtubs, doorknobs ... it's pretty friggin degrading.)  So I schedule my block series every 6 months.  And twice a year, for a few weeks, I just have to suck it up and deal.

My Littles had their last match on Monday.  They lost but the B and A teams both won.  The "A" Team win gave us the home court advantage for the 1st round of playoff matches to take place today.  For me, this is a blessing and a curse.  (I'm about to do Spoon Math.  Are you ready? ... If you have no idea what I'm talking about, go tohttp://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ and read The Spoon Theory.)  Ok, I am only in possession of about 9 spoons today.  I have already showered, dressed and eaten, but I didn't shave, I only did the bare minimum on my make-up and hair, and I threw some leftover pizza in the microwave.  Cost: 2 Spoons.  I have to drive 25 miles to school, but I have access to the elevator once I get there, so that takes stairs out of the equation, but the elevator dumps me out in one of the middle school hallways where I get mauled and hugged by my favorite Littles.  Cost: 1 Spoon.  Then The Amazing Dad and I have to set up the net, bleachers, chairs, and ref stand.  Cost (even with his help): 2 Spoons.  ~this is where I am able to take one puff of K-Spray~  Between warm-ups and the match itself, I donate 2 more Spoons to the cause.  (Not only physical exertion but all of the emotional highs and lows as well.)  This leaves me with 2 usable Spoons for the rest of my day.  I still have to drive 25 miles to get home and I still need to eat, get into my pj's and put my pain riddled body in bed, which will gobble up those last 2.  Barring any unforeseen circumstances, I'd say that I've planned my Spoons out pretty well.

I have faith that I have done everything in my power to be present in today.  I am fulfilling my responsibilities and I am doing the 1 thing that I love most ... coaching volleyball.  I have faith that the Skank is going to try to mess with me as much as possible for the next few days, and I have faith that, regardless of what she does to my body, my soul and my spirit will both continue to soar.  I also have faith that it's entirely possible that I'm talking out of my oostakaka right now.  I'm trying to be optimistic, but, at the same time, I'm a realist.

Food For Thought

Ok RSDers, you've read about how I always try to be prepared for the worst case scenarios when it comes to my RSD, but now ... oi vey ... there is something that has recently been brought to my attention that I hadn't thought too much about in the past, outside of blockbuster movies and tv shows, that is.  I have never really fashioned myself as a Conspiracy Theorist, but what if ...

What if the Mayans and the Hopi are right?  As much as I would like to believe that the Mayans just ran out of rock to write upon, what if their prophesies are correct?  What if something happens on December 21, 2012?  Do I think it will be the end of the world?  Um ... no.  But what if something happens to the one thing that connects us and comforts us all on a daily basis?  What if we become cut off from from our friends and loved ones and medical personnel because the World Wide Web crashes indefinitely and we, the RSDers, are left with what's in our medicine cabinets, refrigerators, and pantries.  What if all of the things that hold us together at the seams become unattainable?  Would you be prepared?  How long could you last without your meds, your electric blankets and heating pads, your docs, your therapies, your support groups, or your treatments?  If we were suddenly thrown into a situation where we were our own first, middle, and last line of defense against the beast that is RSD, could you hang tough?  (I went through this back in 1999 as well, but my line of thinking has advanced and matured in the last 13 years to allow for the possibilities and the potential of success.)

I'm no prognosticator, but, if you know me, then you know that I do believe in being prepared.  That is why I am writing about this today, October 1, 2012 instead of December 20, 2012.  I'm not trying to scare anyone or throw anyone into an absolute panic, but what if...?  For me, I feel pretty confident that I could hang tough for a while, although I don't know that for sure.  I have already started taking action in regards to the herbs that I use most for fighting pain by testing my brown thumb.  I've decided that it's not black anymore since I've been able to grow herbs, fruits, and veggies for the 1st time ever, but my thumb is definitely not green ... yet.  Trust me, I'll get it there.  I have also decided to start stocking up on fabric softener, as well as my sock supply, K-spray supply, Lidocaine cream stash, and blanket supply.  I have my 2 Tupperware thingies of rice and beans for desensitization therapy and my therapy ball.  I hear that there are battery packs that you can buy for things that require being plugged in to electrical current, and that also means buying more batteries ... .. ... for my heating pads, you perverts!!  I have the remnants of my old camping gear for cooking, should the situation call for it, because you know I have to have my coffee.  But now I am stuck thinking about things like food, fuel, and drinkable water.  Seriously??  My brain is going there??  Not fair!!

I should be focused on my upcoming series of blocks on the 17th, how I'm going to get through all of the weather changes of fall and winter, and (duh) today's volleyball matches and the championship tournament at the end of the week.  But I sit here at my kitchen table looking around at everything in my house and asking myself, "Could I live without that?"  What if??

I have faith that I could survive something, for lack of a better term, apocalyptic, if, in fact, it does happen.  I have faith that I have enough time to gather my senses and wits (and a couple extra bucks) to come up with an RSD fighting plan so that if I needed to become fully self-sufficient, I could, even with my RSD.  There's more to being prepared than just making sure that you have enough of any given precaution for a trip to your treatment facility, a vacation, a trip to the store, a drive through the mountains or to the beach, flying, or going to events of any kind ... there is being prepared for the worst of the worst.  Just some food for thought.  I know this may seem morbid, twisted, pessimistic, and maybe even a little crazy. (consider the source)  But ... what if???

Fickle Fate

Do you believe in fate?  Every time I begin to lose my faith in fate (yes, you read that correctly) I get slapped upside the back of the head with it.  Yesterday was bittersweet in every sense of the word.  I awoke to the news of the passing of one of the most influential men in my life.  Thanks to "Coach" I was able to graduate with my high school class instead of being held back a year ... or 2.  Even though he was the wrestling coach, we all called him "Coach."  He was the Special Education Teacher and I can honestly tell you that I deserved to be in his 1st period class during my senior year.  He was the one who determined that I had a learning disability, and he was the only one who knew how to get me back on the right track.  He had my IQ tested, I scored in the top 2% of my class (if you know some of the people with whom I graduated, you'll know how high that really is).  My learning disability was "lack of motivation."  I was fine as long as it was music, english lit, history, psychology, speech, or phys ed.  My lack of motivation kicked in when it came to biology, chemistry, algebra, geometry, trigonometry, and showing up to class ... period.  Coach never gave up on me and gave me the building blocks for believing in myself.  And he also showed me, through his own actions, how to give of self.  I will miss his presence on this earth, but I will take some comfort in knowing that he is now back in the position to watch over all of us again.

Being as RSDer, my pain levels are directly affected by my emotions.  I was a train wreck of epic proportions yesterday.  Aaaaaaaand it was Game Day.  Forcing myself under the pelting needles (aka: shower) didn't help my situation.  I could barely get my arms above my head to wash my hair, and all of my clothes rubbed my skin the wrong way ... aaaaand it was Game Day.  I had hives on my face, and all of the veins in both feet were bulging ... aaaand did I mention that it was Game Day?  I slathered my body in Lidocaine cream and put on my brown cat suit (tight fitting capri leggings and tank top), followed by the only capri pants that could fit over the leggings and a cream colored, duster length, ultra soft cardigan.  I was still struggling to get my arms over my head, so I donned a brown plaid hat.  Over a layer of clear Benedryl lotion, I was able to put on the basic make-up ... powder, blush, and mascara, the latter of which I did begrudgingly due to my puffy and teary eyes.  I put on my brown wedge flip flops and put my signature mismatched crazy socks in my coach's bag to replace the flip flops as soon as I got into the school.  Pain (and emotions) be damned, it was Game Day.

I got to the school and went straight to Houdini's classroom, forgetting that 2 of my C Team girls were in his current Language Arts class.  As soon as I walked through the door, my 2 Littles came running up to me for their daily hugs <cue recently suppressed tears> and they told me that they were ready to win for a change.  Luckily the brim of my hat was pulled low enough that they couldn't see me cry.  Houdini, however, didn't miss my trick.  He herded me into the hallway to find out what was wrong.  After I told him about Coach, he asked me, "Why are you here?  Go home!!"  I replied, "It's Game Day and I need distractions." 

Here's where fate kicked my oostakaka ... As I was getting ready to head down to the gym to get it ready for our matches, a few members of the A Team stopped me to ask for my opinion.  One of the girls held out an armful of single crazy socks and asked me to pick her socks for their match.  Another girl said that a B Team girl had sent out an email to the whole team the night before reminding them to wear their best crazy socks for the matches.  Seriously??  I had just dried the last of my tears and snot from the previous emotional outburst!!  Gosh darn those kids!!  Okay, so I got the net up and tightened, the ref stand in place, the ball carts out, and I sat down to write out my starting line-up.  This was when one of my girls got a good look at my splotchy face.  She called the rest of our team over and I had to explain to my 8 girls that I had just lost a "Coach" and the tears came crashing down again.  This was the 1st time that the girls had ever seen me cry and I think it scared them a little.  I told them that I didn't want them to go out and play for the coach that I lost, nor did I want them to go out and play for me.  I wanted them to go out on the court and just have fun.  That was what would replace my tears with a smile ... And they did!!  They lost the 1st game but came back and won the next 2.  Our 1st real win!!  We didn't rely on serves to score points, nor did we rely on the other team's mistakes.  We volleyed for them!!  We talked on the court, we moved our feet, we called the ball, and they did what I needed them to do.  Make me smile.  After our 3rd game I was in tears again, but happy tears this time.  My girls were finally acting like a real team!!

Coach, 

I will miss you but I know you were there with me yesterday, I felt your presence.  I have faith that, someday, I will be to my girls what you were/are to me.  I have faith that you will always be that little angel on my shoulder telling me to have patience and reminding me to use what you taught me to benefit my Littles.  You were always one of the good guys!!

All My Love,

Jenn (aka ... Spaz)    

I am still dealing with the physical aftermath of my emotions, but I have faith that I will have the time later this week to deal with them appropriately.  1 more day of practice before the middle school girls go off for their Eco-Week adventure, so I'll get 5 days in which to get myself as right as I can be when I'm less than a month away from my bi-annual blocks.  I hate RSD, I hate cancer, I hate death, I hate pain, and I hate when I have no control over any of them.  But I love me, I love my girls, I love volleyball, and I love feeling the backhand of fate. 

The Price of Life

I hate money.  It freaking sucks!!  Don't get me wrong, I would love to have more, but the choke-hold that it has on my life is getting a bit out of control ... and old ... and a lot of people don't/won't/can't understand what I have to go through because of it.  Being on a severely limited, obscenely fixed income doesn't allow for any type of savings account, vacation fund, emergency expenses, nuthin'!!  My bills are barely getting paid (with a little help from my folks) and my refrigerator light only illuminates the baron, plexi-glass shelves.  I can't afford gas to go anywhere, and I can't afford ticket prices of any kind (plane, concert, ball game, event, you name it).  The brakes on the Buttmobile are beginning to grind a bit, and I can't afford to get them fixed or replaced.  Being a "volunteer" volleyball coach who travels approximately 50 miles (round trip) per day, on her own dime, doesn't help the empty wallet situation either.  Lack of money for the even the basic necessities causes stress ... which causes more RSD pain ... which adds to the stress ... which adds to the pain ... aaaaaand here comes fall and winter, birthdays and holidays, and cold and flu season.  FU RSD, for all that you have taken from me and for all of the priorities that you have forced me to reevaluate.

Pay for a plane ticket, or pay rent?  Pay for a full tank of gas, or put in $10 worth so that I can drive to the pharmacy and pay for my meds?  Pay for a ticket to a pro ball game or event + gas, or pay for groceries?  Spend spoons on one night out, or save spoons for volleyball practice and the 8 girls who depend on me (and the 21 other players and coaches who count on me)?  Pay for a birthday or thank you card, or pay for the extra water that I use everyday on the fruits and vegetables in my gardens?      

But you know what?  I'm still grateful.  I have a family that helps me out whenever they can.  I have dear friends that are always good for a giggle, a smile, or a leg up.  I have a dog that loves me, even on my worst days.  I have a roof over my head.  Thanks to the Bombshell, I have hand-me-down socks on my feet and hand-me-down tank tops on under my 13 year old robe.  Thanks to Houdini, my soul is filled with volleyball and a sense of being needed and appreciated for me, not just what I can do for them.

And there are things that I can afford!!  I can afford to be a friend.  I can afford to run my mouth raising awareness for RSD.  I can afford to love.  I can afford to crack jokes at my own expense (pun intended).  I can afford to stand up for myself and my beliefs.  I can afford coffee.  I can afford time.  I can afford hugs, even when they hurt.  I can afford to cheer someone on.  I can afford to share my experiences with those who ask.

I have faith that, although I am not wealthy in the monetary vernacular, I am a gazillionaire when it comes to being blessed.  I have my ultra amazing family.  I have Kiva, my ColoAngel, the Sweet Ones, the GingerFam, the Warrior Mama and the Penguin, my volleyball team, my porno dealer (hats), an adventurous friend through whom I can afford to live vicariously, my faith, a sense of humor, intelligence, and I even have a sense of peace.  Pain be damned, I'll pay the price for this life that I've been forced to create for myself, because life, in any sense of the word, is worth it.

Heart and Soul ... "F" The Body (sorry Mom)

What makes you happy?  I'm talking about the kind of happiness that brings joy, contentment, frustration, anxiety, panic, hilarity, relief, and excitement.  If you have children or grandchildren, you probably answered my question with their names.  But what if you didn't have any kids or grandkids?  What would make you truly happy then?  Your spouse/significant other?  What if you didn't have one of those either, what would make you genuinely happy?  Just think about it for a little minute ...

Thanks to my RSD and so many nerve blocks using fluoroscopic imaging and the bleeping x-ray machine, I am unable to have any children of my own, let alone grandchildren.  Hence my love, adoration, obsession, and affinity for Kiva, my niece, and my nephew.  But the latter 2 live 9 hours away and I only get to see them a couple of times a year.  Kiva is the rock on which I build my dreams ... But she's a dog, and there is only so much that a dog can do.  Human interaction is a necessity in life for all humans.  Divorce and RSD separated me from my spouse.  It was my decision and it was the right decision for me to make.  I am practically a shut-in for 7 months out of the year, unless I go someplace warm, so where do I go to find the kind of happiness that helps me to forget about my pain, puts a genuine smile on my face, lets me be goofy and crazy, and brings joy back into my life?

I'm an RSDer, a daughter, a sister, a sister-in-law, an aunt, a niece, a cousin, a friend, an advocate, a smart-ass, a realist, a woman, a broad, a lady ... and a Coach!!  In the last 20 years, every time I have tried to quit, retire, or take a hiatus, I have been miserable, depressed, in amplified pain, and a bitch to be around.  When I am able to shun the pain and discomfort and don the Vera Bradley lanyard with my coach's whistle and stopwatch on it, I am a reborn member of the human race.  Even if I'm not the "Head Coach," even if most of the girls on my team have never ever even touched a volleyball before they step onto my court, even if I don't get paid to do it, I am a Coach.  I belong with personalities that match my own.  I belong in a place where I can make a difference, even if it's only in 1 person's life.  I am a Coach and coaching makes me happy ... and it's noticeable to everyone in my life!!  I am not an individual.  I function best when I am a part of a team, regardless of the type of team.  When I am part of a team, I feel valuable and I have motivation to be an outstanding member of that team.  Whether it's with my family team, my team of friends, being in a relationship, working on a team to raise awareness for RSD, working within a team of coaches, or leading a team on the court, it's the "team" that keeps me going.

Yesterday at practice 2 of my girls got their underhand serves over the net.  Just one time each, but the shock and elation of both of those serves brought me to my knees with joy.  The mom that "bullied and accosted" me last week about the amount of running that I made the girls do instead of giving them skill training came up to me after practice and informed me that she had been working with her daughter ... and making her run when she would make a dumb mistake.  She told me that she had watched the whole practice this time and that the method to my madness was made evident to her.  She apologized and that mom got a high five from this coach.  Another mom takes her camera to every game, even if her daughter isn't playing that day.  She emails us coaches the pictures almost right away.  We have about 28 girls for 3 teams, and the stands have been full of black and yellow clad fans ... and that was just for our 2 away games that we've had so far.  The girls are starting to see what it means to be a member of a team.  I ... am ... happy!!

I have faith that I will forever remain "Coach."  Pain be damned, it's just who I am.  RSD, you may have taken the girl out of the court, but you will never take the court out of the girl.  Nice try, you bat rastard, nice try!!
    

Sometimes Avoidance Is Key

I have an aversion to folding and putting away laundry.  I have this large laundry basket bulging and brimming and spilling out clean clothes all over my bedroom floor.  I looked at it for a few minutes today.  Then I sat on the foot of my bed and looked at it for a little while longer as I tried to find the nerve to tackle it.  Then I laid back on my bed and stared hypnotically at the twirling ceiling fan.  I woke up an hour later and decided to write/blog instead of taking the chance that being in the presence of Apparel Mountain would render me unconscious again.

My couch still needs to be vacuumed, my dishwasher still needs to be unloaded and reloaded, the weeds in my gardens aren't going to pull themselves, and now I am forced to switch up my game plan for practice.  (Our school is still in the final stages of construction and the gym is being used as storage for things like desks, chairs, bulletin boards, tables, boxes of books, carpet, lighting fixtures, all things not conducive to volleyball.)  So ... there's a local-ish beach volleyball club that has been allowing us to use their courts when we can't get onto a regular one.  On one hand, I love it!!  Beach volleyball is just plain fun when you know what you're doing!!  On the other hand, it is not the foothold where one instills the initial skills needed to play the sport.  And on that same 2nd hand, I really don't enjoy finding sand "where the sun don't shine" when I get home.  If I were able to enjoy a beautiful ocean while embedding sand in hidden crevices, I wouldn't complain.  But this is Colorado, and until the San Andreas Fault collapses, there is no ocean.

Usually motivation isn't quite this difficult for me to muster, but I did a dumb thing yesterday.  It was totally random and to a Normie-Girl it wouldn't even register on pain or paranoia indexes.  While getting ready for our games yesterday, I was using my hair straightener because, really, you don't want me to not, and I pinched the ring finger of my right hand.  Right away the ring, middle, and pinky fingers started to flame and throb and turn red and ... wait for it ... I didn't even burn myself, just got a little pinched!!  The only telltale sign that there was an issue is a tiny little blood blister on the pad of my finger ... and it still freaking hurts!!!!!!!!  Honestly, I'm a little intimidated by my ability to do dumb stuff like that, and I'm afraid that if I get on a roll again, and start moving too fast again, I'll do something dumb again, and put myself into a deeper flare than the one I'm already experiencing.  FU RSD!!! I hate this bat rastard of a disease!!  I want my real life back!!  I want to not have to be paranoid of "possibilities" all of the damn time!!  <sigh>  ok, I feel a little better now, thanks.

I have faith that by the time practice is over tomorrow, it will take me the whole entire 3 day weekend to recover.  I have faith that I will spend my spoons on the girls and not my tedious household chores.  I have faith that I will continue to rifle through Apparel Mountain for clean clothes, and on the off-chance that I need something to be ironed, I have faith that I will spray it down with my water bottle and stick it back in the dryer for another round ... or 2.  (To the people that just called me "lazy," I salute you with my throbbing middle finger.  You couldn't tolerate half of the pain and discomfort that I deal with on a daily basis!!)

The Little Girl Who Cried Wolf

Last night was, for lack of a better term, brutal.  It had absolutely nothing to with RSD at the time, but the after effects are all RSD related!!  Kiva and I had our date night last night.  We had pizza, ice cream, took a walk, watched a movie, and we were in our beds by 11.  We had a great night!!!  The chaos began at 11:30.

Kiva had already tucked me in and had returned to her own bed.  I was just about to turn off the light on my nightstand when she started in with her guttural growl.  Before I could angle my body over the edge of the bed to see what she was going on about, the growl turned into a full blown German Shepherd "alert" bark as she sprang into a full run to the living room window.  I grabbed my machete (yes, I have a machete) from under my bed and quickly followed her.  I flipped the porch light switch to "on" and joined Kiva on the couch to examine our outer world through the window.  Nothing.  Not a cat, not a raccoon, not a burglar, not a lost drunk (yes, we've had those before), just silence and darkness.  I turned the porch light off and we returned to the bedroom.

By 12:40 my heart rate had returned to it's normal thumping and I was able to turn off the light and attempt to find some form of sleep.  At 1:45 she did it again.  It started with the low, guttural growl again, but I didn't hear it, I felt it.  At some point during that hour, she had rejoined me on my bed and had laid her head on my tummy as I slept.  Before I could roll onto my side to turn on the nightstand light, she launched off of the bed in full blown "attack" mode.  Machete in hand, I was hot on her heels.  I turned the porch light on again, joined her on the couch again, and, again, nothing.  I looked at her, scratched her by her ear, and said, "Spunkin, you have got to quit doing this!  Back to bed!"  The timer had turned off the tv in my room so I changed my bedtime movie and reset it for another 2 hours, not knowing if or when I would be able to fall back asleep.  I put the machete back under my bed and opted for a little iPhone solitaire to calm me down again.  The last time I remember looking at the clock, it was 2:30.

At 3:57 deja vu struck like lightening.  Kiva was already at the living room window and I can only assume (you know what that means) that her 1st intention was to check it out before she woke me.  Again I grabbed the machete.  Again I turned on the porch light.  Again I joined her at the window.  Again nothing!!  All of these quick movements getting out of bed were starting to cause a small skin flare that encompassed the right side of my body.  The nerve sweats started kicking in before I had even returned the knife to it's holster.  I turned on my ceiling fan, opened one of my bedroom windows, restarted the tv timer again, and Kiva was snoring on her bed before my head hit my pillows.

4:30.  Light off.  Still awake.  Playing solitaire.  Listening to my bedtime movie.  Let the growls begin ... again!!  I was about to scold that dang dog of mine when I heard a commotion through my open window.  Without turning the nightstand light on, I pointed to the bedroom door and told Kiva to "GO!!"  She unleashed the fury of her most relentless bark as she Usain Bolt-ed to the front window ... again.  As I was reaching for my very large knife (again) I heard something metal clank on the sidewalk in front of my house.  My heart began to hammer against my chest.  I could feel sweat on my forehead.  I was genuinely scared.  This time I also grabbed my phone and started dialing 9-1-1.  I flipped on the porch light, flung my front door open, brandished my pretty machete, and yelled, "What the hell???"  (Kiva was still growling and barking and trying to get through the front window, like she does with the mailman.)  In the time it took those 2 moronic males to say, "Oh shit!" Kiva had jumped over the arm of the couch and was literally standing on my feet, at the screen door.  The 9-1-1 dispatcher had answered and I informed her that 2 "men" were trying to break into my car.  Hearing all of the commotion on my end, she asked me if my dog was contained.  HAHA!!  I had to laugh.  The 2 idiots OJ'd back up my street and around the corner.  2 cop cars showed up, 1 stayed with Kiva and me and the other took off in the direction of fools-r-us.

Needless to say, I have been up ever since.  Very little sleep, stress induced skin flare, elevated heart rate, muscle spasms ... these things do not make for a happy camper.  But the correlation between my dog and the story of the little boy who cried wolf just makes me giggle a little.

I have faith that Kiva will continue to protect me and alert me when something is not quite right in our world.  I have faith that, although I have not heard from the police yet during actual daylight hours, they will catch the perps with the help of my descriptions.  One officer said, "You're lucky to have a dog like her."  I replied, "I know."

Happy Adrenaline Strikes Again

The half-pint in the black shirt: "She's weird."
The belle in the purple tank: "But she's funny."
The snarky little miss in pink: "I don't like her.  She doesn't do anything but talk."
The wide-eyed doe in yellow"  "um ... She heard you."
Me: "Why yes, yes I did." (and then I winked at the snarky one)

I absolutely love Day 1, after the butterflies flutter by, that is.  First impressions are so important in sports and it is at this time in their lives when they learn it ... aaaaaaand usually the hard way.  The only "competition" that most of these girls have seen has been sibling rivalry.  If you want to impress the coach, aka make the team, you don't take to the court passively.  You run.  You take every word, that the coach says, to heart and apply their words the next time it's your turn.  You don't roll your eyes at the coach.  When the coach asks a question, you reply enthusiastically.  And when the coach asks you your name, you don't turn to the girl next to you and have her answer for you.  Aahhhhhhhhh ... the joys of middle school volleyball.  (Let me go on record right now and say that I am so glad that I'm not the "adult in charge" this time around.  No busy work, just volleyball!!  ha cha cha!!!!)

Practice ended at 5 and the pain remained at bay until almost 9:30!!!  Happy adrenaline is a wave I wish I could keep riding, but RSD always brings me crashing back down to reality, at some point.  I was so exhausted that I forgot to take my bedtime meds until after I was already in bed.  As soon as I got up to take them, Kiva decided that she should probably go outside one last time ... to bark at the raccoons in the alley.  Aaaaaand then I was awake ... and so were the neighbors.  As soon as we got back in our beds, I remembered my meds ... again.   My body said, "screw it,"  the exhaustion took over, and I was asleep before Memphis Raines played "Low Rider."

My body decided I had to get up at 5 which did not coincide with my having set the timer on Bertha for 6:30 ... so I had to wait for my coffee this morning.  I'm not a fan of that.  It only took 3 hours for me to be able to walk upright and another hour after that I was able to talk myself into the shower. Cheers to volleyball season ... and remembering to take my K-spray!!!

I have faith that today's practice will better than yesterday's practice.  I have faith that the girls will learn and accept that I may be a dork, but I am the coolest dork that they'll ever meet.  I have faith that my body will continue to fight me, but my will is strong and I will keep fighting back every step of the way.  I have faith that, despite the exhaustion, I will remember to take my meds before bed.  I'll defo be needing more downtime during the season, but it will all be worth it as my heart continues to overflow with the joys of coaching volleyball again!!



    

Another One Bites the Dust

Three years ago I was able to cross something off of my Bucket List.  Two years ago I drew a line through another list item.  Today I get to cross yet 1 more thing off of that list.  It all seems pretty surreal to this RSDer, considering the nature of the main activity, but it feels so damn good to feel empowered to the point of acting on it.  

Three years ago, while I was the head coach (only coach) for 22 middle school volleyballers, my brother, Houdini, stepped up to be my assistant coach for our tournaments.  He took time out of his crazy busy schedule (getting his teaching degree and coaching a Jr. Varsity v-ball team at a local high school) to help me take 3 teams into two weekend tournaments.  I cannot begin to tell you how proud (and relieved) it made me feel to be able to walk into a gym with him and know that he had my back and would coach my B and C teams with the same principles that I used.  (After all, guess who he had for his first coach ... heh heh ... yup!!)  It was tough for him to have to "dummy-down" his skill levels for my girls, but he did great!!  I mean, there's a pretty big gap between junior high ball and junior varsity ball ... big gap!!  Huge!!!  But having him as my assistant coach got crossed off of the list, right then and there!!

Two years ago, Houdini and I played on a rec league volleyball team.  He always played to my left so that he could take the serves that were aimed in my direction.  Even with my RSD, I can pass, I can set, I can hit, I can serve underhand only, I can tip, but I cannot serve receive, serve overhand, or dive for a ball.  Towards the end of our season, our sister, the Bombshell, was in town with her family and she and her husband took the court with us!!  I played in a competitive match with both of my siblings!!  We lost 2-1 but I didn't care.  (That kinda pissed off the b-i-l, but...)  I was on cloud nine, having just done something that I'd always hoped to do, but never thought it would ever happen.  <BAM> one more thing crossed off of my list!!

To some, these might seem trivial.  To me, they were priceless!!  Being 12 and 14 years older than the Bombshell and Houdini, respectively, I was the one who taught both of them to play when they were very, very young.  I coached both of them when they were in high school, but we had never taken the court together.  When I contracted RSD in 1991, they were 10 and 8.  They watched me fight to be able to coach so that I continue to be in their lives.  Volleyball was our connection while the years and pain put barriers between us.

2 years ago I retired from coaching because of my health.  Today I come out of retirement and become Houdini's assistant coach for his charter middle school's inaugural volleyball season.  Now I get to have his back!!  I am scared, nervous, jittery (no, it's not the caffeine), excited, paranoid, and hopeful.  I feel genuinely needed for the first time in quite a while!!  He informed me last night that he now knows how I felt when I had 22 girls all by myself.  He's got 28 and a gal that he teaches with as the other assistant, though she's never coached a day in her life.  Houdini's exact words were, "Jenn, I need you.  I need you help me teach the basics, and help me transition down to this level."  How could I say, "no"??  It's volleyball!!  And it's my brother!!  And it's volleyball!!   

I had faith that this day would come!!  I didn't know how I would be able to respond to the calling, but I knew it would happen.  I have faith that I will help my brother to the best of my ability.  I have faith that I will fill the volleyball sized gap in my heart with these crazy kids and this wonderful sport.  Pain be damned, I'm coaching again!!  Can I get a "WOOT WOOT"?????